I’ve always wondered what patients who wake up disoriented or delirious are thinking. What was their experience like? What do they remember? Sometimes, patients will say “I woke up bad last time” and almost seem ashamed.
“Why are they so hard on themselves?” I wondered, “It’s not their fault.”
And then, it happened to me. I was diagnosed with breast cancer during the very beginning of the COVID pandemic, when New York was under siege. It was terrifying. I was scheduled for a mastectomy and sentinel lymph node biopsy on a Tuesday. I was very concerned because I kept getting ever so slightly upstaged and there was a suspicious lymph node that the radiologists kept commenting on. After surgery, while waking up in recovery, I heard the nurse saying that the frozen sections of the sentinel lymph nodes were negative. I was ecstatic – I had fully expected them to be positive. I knew we needed the final pathology report but I decided to just be happy the rest of the hospital stay.
The period of diagnosis and staging of cancer is the most terrifying time. After belonging to a cancer group the last few years, I can say that is a pretty universal opinion. I found myself researching the details of my cancer, staging, and the survival odds. At the time of my biopsy diagnosis, it was the Friday before Mother’s Day weekend and my son’s 4th Birthday. My kids had just turned 4 and 7 years old. My husband kept taking pictures of me with the kids. I don’t even think he realized how obvious it was he was scared and starting to make some memories. Finally, I told him, “I know you are worried, but taking so many pictures is starting to freak me out. I know this is scary but right now it’s treatable. Everything I going to be okay!”
Two days after my original surgery, I received the final pathology report that there was a positive lymph node. Within a few days I was back in my surgeon’s office, tested for COVID and scheduled for an axillary node dissection, a week to the date of my mastectomy. I had been on the run all week getting things ready for my surgery and making sure everyone at home was okay. I very methodically presented a very stable front so that nobody would worry any more than they had to. To be clear, this was all because I couldn’t handle anyone being upset. It made me anxious. Soon enough, off to surgery I went. I will never forget waking up and all the lessons I learned in being a patient.
I woke up (at least cognitively) angry, disheveled and crying. I had been “awake” for some time – I could tell, since I was sitting up on the stretcher. It was dark because my eyes were closed and when I opened them it was blindingly bright. I had just yelled at someone and I was satisfied. I had won. I have no idea what I was winning but the surgeon was coming back to talk to me. V-I-C-T-O-R-Y! Finally, someone who knows, I thought. I trusted her very much.
Surgeon: “What’s wrong?”
Me: “Everyone is lying to me and I know it.”
Surgeon: “About what?”
Me: “I know that 3 more lymph nodes are positive, and everybody is lying.”
Surgeon: “But how do you know?”
Me: “The pathologist said so. I heard him.” I did? This was news to me too.
Surgeon: “But we sent the nodes to pathology for dissection. He wasn’t here.”
Me: “He was here! I heard him.” Umm, was he? What am I saying?
Surgeon: “We didn’t do a frozen.”
Me: I’m remembering our preop discussion about how it goes to pathology, and I won’t know for 5-7 days. There is no way the pathologist was in here.
Surgeon: “I think that maybe you had a bad dream.”
Me: “Yeah, maybe I did BUT IT WAS SO REAL.” I start ugly crying and put the sheet over my face like a toddler.
Yes, I was melting down in the OR at my place of work in front of the whole team. It was my first meltdown since the day of diagnosis, and I was hysterically crying; but, at the same time, it was stress-relieving. After some time, I engaged the team again.
Me (towards anesthesia team): “Is my uvula okay?”
Anesthesia team: “Yes!”
Me to EVERYONE: “How many lymph nodes were there?” I heard a collective eye roll from around the room.
Everyone in the OR: “We DON’T know!” Immediately, I knew this was not the first time I had asked this question. And I needed to pivot.
Then, someone, perhaps the surgical tech, yelled out, “A half a specimen cup.”
I heard someone else whisper, “Shh what are you doing?”
To which the tech replied, “I don’t know, sometimes giving them info helps.”
And it did! I calmed down and we were able to leave the OR.
Later that night, I had found out a little more about my OR “victory” and had time to reflect. I had called the CRNA a liar and told her to stop lying to me. (I texted her later to apologize). She decided to call the surgeon back to the OR. You see, I was going through the motions of keeping things normal and pushing down all my fears. At the beginning of my diagnosis, I was trying to play the survival odds game. My biggest fear after learning that my sentinel node was positive was that 3 more positive lymph nodes would increase my staging and therefore decrease my survival odds. It’s a ridiculous mental game but also why the beginning is so stressful. Until you have all the information and a plan, the parts are always moving and unknown. This realization was like a punch in the stomach.
I sat alone in my room that evening, reflecting. As an anesthesiologist, I know that patients presenting for surgery are under a great deal of stress, and that planning for surgery is a huge disruption to daily life, but now I really KNOW the magnitude. I reflected for weeks on that experience and how intense it was for me. And a few months later, when I had to go under anesthesia again for a surgical infection, I gave the same, “I have bad wake-ups” warning to my anesthesia team that my patients given to me. As for my uvula, it’s been swollen two times out of four surgeries. It doesn’t hurt but I certainly could feel it for 4-5 days and was swallowing compulsively. Now, I am a pleasantly difficult professional patient says, “Put the IV here! Can we just do a TIVA? Watch out for my uvula!”
There are so many more things that gave me more insight into what a patient goes through during my journey, but this was the one that left the lasting mark. Although some recollections of this incident may vary as I was still medicated, the sentiment remains.